Natural History Data
Understanding CHM progression is essential for advancing research and informing clinical trial design. In 2024, the Choroideremia Research Foundation partnered with Biogen and the Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP) to make depersonalized CHM natural history data available to qualified researchers worldwide. In 2025, CRF expanded awareness and continued adding to this resource, strengthening global collaboration and helping propel progress toward future treatments.
The following natural history and outcomes datasets are currently available through RDCA-DAP:
- Efficacy and Safety of BIIB111 for the Treatment of Choroideremia (STAR)
- Sponsor: Biogen
- NCT: NCT03496012
- A Study to Assess Choroideremia (CHM) Health Outcomes
- Sponsor: Biogen
- NCT: NCT04750785
- Natural History of the Progression of Choroideremia Study
- Sponsor: Biogen (NightstaRx)
- NCP: NCT03359551
- Natural Disease Progression in Participants With Choroideremia
- NCP: NCT04795206
To access this data, create an account: RDCA-DAP Portal
More information about this collaborative effort can be found here:
CRF is registered as a US 501(c)3 nonprofit organization EIN: 04-3511754
Our mission is to raise funds in support of scientific research leading to a treatment or cure of choroideremia, a hereditary retinal-degenerative disease that causes blindness; to educate people affected by the disease; and to inform the public.
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